What happens if your child is Not Fine In School?

When our younger daughter told me she was creating a video to share about her school experiences, my heart did a little leap. I was excited and apprehensive at the same time. Her school life has been full of ups and downs; we've met some great people along the way who have really tried to help (thank you, if that was you!) but we have also come across those who have not understood and those who have been tied to a system that hasn't let them have our child's interests and abilities as a priority.

Sasha was diagnosed with autism at the age of two and had an EHCP (Education Health and Care Plan) in place before she started primary school at the age of four (actually the equivalent paperwork back then was called a Statement - I wrote about our challenges applying for that in this old post). She attended the mainstream primary, with support, until just after she turned 10. The infant school was great and did everything they could to help her, and at the junior school a brilliant teaching assistant supported Sasha. But we eventually realised that she would end up joining a huge group of children who are Not Fine In School.

As you'll see from her video below, we reached a point in 2017 where Sasha was no longer able to learn alongside her mainstream classmates and a new direction was needed. Sasha still wanted to be in school, but she wanted to be in a school with other children like her. That was part of the challenge we then faced; in our county, there were no specialist schools for able autistic children, and certainly no schools that were ready or willing to welcome a child with a complex Pathological Demand Avoidance profile. As parents we did what we could, and pushed for a space at the only school we knew of that we felt was worth trying, but that was an MLD (Moderate Learning Disbilities) school for children of mixed abilities. Sasha just about coped with that school for a year, but we all knew it wasn't the right place for her.

What has followed since her departure from that school in 2019 would take up far too much space in this post to describe, but there will be more detail in my book which is due to be published next year. To cut a long story short, we had to go to a SEND Tribunal in February this year and Sasha was, against our wishes, put on roll at a fourth education establishment. Since then, she has remained at home with some limited contact. Over summer she has worked hard on creating the video animation below; all her own artwork, ideas and editing skills.

This whole project was Sasha's idea. We didn't suggest it and she didn't want us to give any guidance along the way. Sasha is very determined and she motivated herself, setting a timeline ahead of when she wanted the video published by (Back to School days) and ensuring that she had enough time built in for the procrastination she knew she would need to do! Sasha's words explain what her video is about:

School has a much larger negative impact on some of us than you might think.

School has tormented us far beyond belief, sometimes for things that are just out of our control. But what we can control is how the system works. We humans were the ones who first implemented the broken system, we have to be the ones to fix it.

I’m aware that yes, in comparison to others, I basically had nothing to complain about my experience. There are probably people out there who wish they had my experience instead of their own. I had even contemplated posting this video at all because I’m not suffering as much in comparison, and nobody’s going to care about my dumb experiences as an already troubled kid for reasons out of anybody’s control. 

But as evidenced by the fact you’re here, I did eventually decide to post it because “others have it worse” is not a valid excuse. Yes people are suffering more than me, but that doesn’t mean I don’t have a right to complain about my own experiences. Sure, there is a point where we draw the line, but talking about traumatic experiences is not that point. It took a lot to even get myself to make this video, and I probably should’ve waited a while longer, but I can’t stay suffering in silence forever. 

Future me is probably gonna be looking at this video thinking “what the hell was this kid thinking trying to make a half-assed attempt of a depression vid?”. And to that I say: yes. I did try. I may look back and think it’s stupid, but I tried what I could at this time.

There’s honestly so much more I could be adding to this argument, but I don’t want to step into territory where even I don’t know what’s wrong or right. I’m still young, I’m still trying to learn myself. Plus, I’m terrible at finding the right words, so it’d probably come out wrong anyway. Either way, this is probably gonna be my last video of the year, I worked far too much blood, sweat, and tears over the summer into this and I’m feeling video burnout. Don’t worry, I’m not going anywhere, I’m just gonna be focusing on my art for a while.

Cyall.

It has felt like an uphill battle to explain our daughter's ability levels and the extent of her everyday challenges to people who have not spent much time with her (and of course that includes those Local Authority representatives who fought against us at Tribunal). It seems to be the case that 'Mum's' voice is rarely welcomed or valued. It is worth pointing out that communication is an area of life that Sasha has always struggled with, but even more so in the last couple of years. I suspect she has always had an abudance of thoughts on life and a good understanding of many aspects of society, but she finds it very difficult to express herself orally. Although she tried art therapy last year, she was unable to talk to the therapist at all. Having a two-way conversation with anyone, even with members of her own family, is extremely difficult and happens rarely these days.

So to hear her speaking so maturely and eloquently about her experiences, and to see that she has created this piece that many others have said they relate to, despite the fact she has not followed any academic curriculum for the last few years, makes me proud but also makes my heart ache a little bit. We want others to be able to see her true potential and help her to achieve the best she possibly can in life. Up until this point, it feels like all her support needs have landed squarely on my shoulders, and I've been doing the best I can despite the judgements and bad attitudes I've had to face along the way. We have no experience in this field of animation and video creation so we will be searching for people who have, but there will be a focus on finding those who are ready to understand and work with our daughter's presentation of PDA. We think her future is bright regardless of the large periods of school education she has missed out on, but there is a bigger discussion to be had on behalf all the children who do not easily fit into the education system, and their families who are subected to huge levels of extra stress. Unsuitable school environments can have a big impact on children’s mental health.

There's a series of posts on my blog sharing experiences of families with children who are not fine in school. The numbers in this group appear to be rising continually and that is not all down to the events of the last couple of years. We need to talk about the curriculum and the way subjects are taught, and the effects on children who find it all too difficult for a variety of reasons. The Government guidance on school attendance is complicated and this leads some schools to assume that putting extra pressure on parents and resorting to fines is the only solution. More understanding and support is urgently needed.